My longgg success story.
TLDR; got a cyst in 8th grade on my vulva, cyst would come and go, got it checked out and doctor told me it was bartholin, had a bad flare up a few years later and went to another doctor who told me it was HS, dermatologist said the same but it was only this one cyst ive ever had so i was recommended to plastic surgeon, had the surgery. got it removed & feeling more confident than i ever have before!!!
Back around 8th grade, I got this boil-like sac on the external side of my vulva. It was painful and was growing but I did nothing about it because eventually I went to take a shower one day and it popped! No I didn’t not tell anyone about it. At the time, I thought that is just an odd and uncomfortable thing to bring up to my mom, “hey i have a weird bump on my vagina and it just popped some nasty fluid out”
Over the years, the area was just an empty sac of skin. Towards the end of high school, the area started to grow a small itchy bump. The bump would produce fluid and fill up that “empty sac” area. When inflamed, it would be irritated and full of fluid until it finally would pop on its own. After it drained, it would go dormant. In college, the routine started to become a little more frequent but still not anything too demanding because it would come and go. I asked a few close friends of mine if they had anything like I was describing but they all said no.
In April 2024, it came but this time did not drain like usual. If anything, it enlarged and it was so big and painful it hurt to walk. I had an appointment in May and I walked to the women’s center. The NP and physician examined it and they decided to cut it open and drain it. It was clearly infected because it was this big red ball. They injected it with local anesthesia(worst pain Ive ever felt) then used a scapel and got all the gunk out. The physician claimed it was a Bartholin cyst. At the time, the NP was second guessing that because usually those are internal and a little more south. Me, sitting there in the most pain I just went through in the world, I didn’t second guess anything. I also couldn’t question something I also had zero clue what it was. I did ask why they did not cut down to the hard lump. I cannot remember what she said off the top of my head but it was something like we dont need to do that for now. I was a little worried because everything was gone but the hard lump but me being in college (it was national marg day), i just got the culture swab and left. They also left the wound open in case it drained more fluid so I left wearing a pad. I will say I left feeling a lot better than before but not totally confident. They prescribed me antibiotics then I had a check up a few weeks after. It did drain a little more but everything was a lot better.
Eventually, the same routine happened but now I could feel the cyst coming on. The hard lump would start to itch then next thing I know I have a sac of fluid. I found that when I would sweat, do alot of movement, or the area is irritated, it would start back up. I still dealt with the same routine until August 2025.
It started again when I went to the beach and I also was sexually involved with someone. This time, the cyst would not go dormant. It was constantly filling back up, itching, and inflamed. It was not physically limiting but visually, it was not nice sight. It got to September and it was still there. It was so annoying and made me feel extremely insecure. As you can tell, I only go to the doctor when things get bad.
In October 2025, I made an appointment to ob/gyn. I told them the entire history of it and how I was told it was a Bartholin cyst. Immediately, when they physically inspected it, they said it looked like HS. That was the first time I ever heard of it so I was so confused. They showed me pictures and sure enough it looked more close to that than a Bartholin. I was excited for a moment because researching Bartholin cysts, it seemed very chronic. Boy, was I humbled when I researched HS. I fell back into a hole. I didn’t know what to do and it was hard because it seemed like I was the only one having this problem. The physican recommended me to visit a dermatologist to confirm if it was due to it being skin related. They also prescribed me antibiotics because I think it was infected at the time. The antibiotics actually helped it a lot. I thought I was cured! But yes, I was humbled again.
My dermatologist appointment was scheduled for December 2025. During the time waiting, I did a lot of research on HS. It made me question the “diagnosis”. I only ever had this one spot. I started to get the tunneling but the same one hard lump remained there. Went to my visit at the dermatologist and they said it was HS. They gave me options birth control, the steriod shot (i forgot the name), or simply surgical removal. The dermatologist actually recommended I go get checked by a plastic surgeon because it was just in the this one area. I still felt defeated. I didn’t want the doctor to tell me I possibly had this chronic disease. I would watch videos or read stories on here how hard it was living with it and I simply did not want to relate. The dermatologist also prescribed me doxycycline, this topical cream, and Hibclens.
In January, I made the consultation with the plastic surgeon and they agreed to do the surgery due to the circumstances. Of course, all the doctors I spoke to told me the surgery is not a 100% for sure but it was worth a shot. I scheduled my surgery for March. I started birth control in December, not HS-related but it did help me alot. My bump did not grow as big and would be less irritating but it still did not go dormant like it used to.
March came around and I was ready for my procedure. It was a 30-min procedure where they used local anesthesia. The surgeon cut out the cyst sac and also all of the scar tissue in the area. The size of the excision was about 3cm. They sent out the cyst to the pathologist and stitched me up with dissolvable stitches. I was uncomfortable for the first few days. Hey, I just got cut open in an area that makes alot of friction. I was also frustrated the first couple weeks. I thought it was coming back. The area was inflamed and lumpy and a bit painful to the touch. I need to give myself a reality check, I had surgery that stuff is supposed to happen. Over time, the area was healing great! After about 3 weeks, I getting back into exercising. I monitored it. It would get inflamed in the beginning but then as more time passed, it wouldn’t do much.
Now. I have not had a flare up. It is complete gone. The only thing left is the stitch scar tissue to loosen up but that will take time. The surgeon did a fantastic job on the stitch and I feel like me. I feel a lot more confident. I feel less stress. I have been able to exercise more freely and even wear “tighter” pants! I still get the worry that it could come back because its only been 3 months post-op but I still am grateful that this 10 year burden is gone!